Meet Adam Samson, advisor to the Data Collaboration Alliance

Adam is a US-based healthcare research professional with expertise in global and single center studies and clinical trial phases across multiple therapeutic areas including endocrinology, cardiovascular, respiratory, and infectious disease.

Tell us about yourself

Hey everyone. I'm Adam Samson. I'm a new board advisor with the DCA

So I've spent about the past 10 years in this industry primarily conducting clinical trials in a number of different therapeutic areas for a range of different companies. Starting in the clinic working directly with patients all the way to now where I'm at a service provider that works with pharma companies that's really heavily technology-focused.

After a few years, I moved into the CRO world which is 'Contract Research Organizations'. These are companies that may take responsibilities from pharmaceutical companies, outsourced services around project management, data management, site management, and monitoring. After being in the field for a bit I thought that I should.

In addition to my practical experience, add some formal training as well and enrolled in a Master's Program in clinical research at George Washington University. While there and conducting and completing that, I spent about three years working at the Duke Clinical Research Institute. Primarily in government-funded clinical trials. Again, really focused in project management, data management, and in pediatric therapeutic areas.

Once I graduated, I made the shift into a global pharmaceutical company and worked on large late-phase trials, not unlike the ones that we hear about in the news today that span the globe.

RIght in the height of the pandemic around May of last year, I decided to join Curebase in my current position as Director of ClinOps.

Really because there was a need to quickly shift and start leveraging software and services, like what Curebase has, to be able to provide remote and digital solutions to clinical trials.

What's your relationship with data?

So Data Protection and Data Ownership in drug development and in my everyday World is really crucial. So I think as everyone has probably heard, drug development is a long, expensive, frustrating process. Not just to patients, but to the healthcare system overall.

And really to make any significant progress in this area, we need access to vast amounts of clinical data in order to improve through technologies such as machine learning and in areas like precision medicine and rare diseases that are really seeing growth and are just so important to overall public health.

So data mining within the healthcare sector has been rapidly expanding to meet this need through the use of data analytics services by drug development companies and service providers to help answer some research questions leveraging electronic medical record data.

This secondary use of clinical data has the potential to improve drug development as well as just overall medical care and ultimately lead to better outcomes for patients and lower the cost burden on the overall healthcare system. The kicker here, of course, is that Data Scientists and others don't use these data responsibly.

Ultimately patients will begin to lose trust and not agree to the continued sharing and collection of their data for these purposes. So the reason that Data Ownership and Data Privacy is so important to me and to drug development is that we really need solutions to protect patients' data while allowing a secure means for permitting access to those data with the proper permissions in place.

Why the Data Collaboration Alliance?

I was immediately struck when stumbling onto the Data Collaboration Alliance by the principles of data collaboration outlined as a kind of foundation that could be used for drug development and in our industry as a whole. These principles of Universal Control, Universal Ownership, and Universal Access, they're digestible and understandable.

They break it down in the sense of, what is ownership without control? So giving us these principles to think through serve as a means for helping us to make meaningful change in this space.

Drug development and healthcare don't currently adhere to these principles. It's something that we're continuing to learn the importance of and ultimately, drug development companies and service providers in this space, we have a responsibility to understand every data source that's utilized and the movement of those data.

This concept of data provenance is necessary for ensuring both data quality but also as I mentioned earlier, for promoting public trust. In order to do that, there needs to be an ongoing dialogue, both in the industry but also with the public, and a clear outline of how data might be used and the process for ensuring data privacy and security. Let's face it, right now it's just impossible to distill the complex process of healthcare data management into a form that's easily understandable to patients and frankly even to most industry stakeholders. So using these principles and one of the things that really struck me the most is this #AccessNotCopies. This idea that really we can take these types of terms and use them to help influence and help people understand how moving towards this route would help us with efficiency and transparency in this space.

Final thoughts?

If I had the opportunity to really just spread a message throughout the drug development industry and service providers like my company - the DCA is really working on real projects to address these critical areas around what it means to have control of data.

And I invite everyone within this sector to engage with the DCA and to understand better the work that DCA does around the technology, the standards, and the methodology, and anyone who would like to know more, I definitely encourage you to visit datacollaboration.org